Jacksonville mom calls for change after losing custody of daughter over medical abuse allegations

JACKSONVILLE, Fla. – Last June, I came across a documentary on Netflix called “Take Care of Maya.” Despite having no idea what it was about, I decided to press play.

The documentary goes back to 2016, when a Florida girl named Maya Kowalski — who suffers from a complex medical condition — was removed from her parents’ custody because health care and government institutions had suspicions of medical child abuse, also known as Munchausen syndrome by proxy.

Long story short, Maya’s mom, Beata, ended up taking her own life after experiencing extreme emotional distress due to her daughter’s removal.

Five days after Beata’s death, Maya was returned to her father — and that’s when a years-long legal battle began. The Kowalskis sued the hospital that kept Maya from going back to her parents for three months.

Fast forward to November 2023, a jury found Johns Hopkins All Children’s Hospital in St. Petersburg liable for all civil claims against them, including false imprisonment of Maya, battery, inflicting emotional distress on Maya’s mom, and the list goes on and on.

The outcome of the trial was an award of more than $200 million for the Kowalskis.

While no amount of money can bring Maya’s mom back to life, many families who have experienced the removal of a child due to wrongful accusations of medical child abuse see the Kowalskis’ verdict with hopeful eyes, trusting it can bring one thing — change.

I never would have thought that watching this documentary would lead me to write the story you are about to read. But in September 2023, I came across an email that I just couldn’t ignore. A Jacksonville mother sent a news tip to our team hoping she could share her story, which instantly made me think of the Kowalskis’ case.

This woman’s 16-year-old daughter was removed from her home for months after she was reported for Munchausen syndrome by proxy.

This is the Weidles’ story.

Malena’s adoption

Terri Weidle always dreamt of being a mom.

After breaking off an engagement at age 40, Terri decided she could live without a husband, but not without a child.

She says she started looking into adopting — specifically international adoptions — and in 2004, started the paperwork to pursue adoption in Guatemala.

Then, on Christmas Eve of 2004, Terri got the call she was waiting for.

“My Christmas Eve gift,” Terri said. “She had been born.”

Terri Weidle holding baby Malena. (Courtesy of Terri Weidle)

Terri met her daughter, Malena, for the first time in February 2005, but she had to wait several months before she was ready to go to her new home in Jacksonville.

In the meantime, Terri visited Malena in Guatemala and was sent photos and videos of Malena so she wouldn’t miss a beat on her growth.

“The minute I saw the photographs on the computer, I fell in love with her,” Terri said. “Every visit, it just was more and more, and it got harder and harder to leave.”

Malena arrived at her new home in Jacksonville on Aug. 31, 2005.

She was 8 months old at the time.

Malena’s health issues

Terri recalled after they returned from a trip to Guatemala, around the time Malena was in first grade, Malena’s stomach pains became so intense she would lie in bed screaming.

“You feel like it’s a failure because your job as a mom is to make it all better. And when mom can’t make it better, what do you do?” Terri said.

According to Terri, doctors kept saying Malena was constipated, but her pain started to affect her academically.

“She was an A-student. She loved school, but she just was not able to go to school,” Terri said. “So, you know, doctors would say ‘You just need to press her to go to school. You just need to take her.’ Well, how do you just force a child that can’t go?”

Malena when she was a little girl. (Copyright 2024 by WJXT News4JAX – All rights reserved.)

Apart from the stomach pains, Malena suddenly began to experience unusual rage episodes, Terri said, explaining that she was later diagnosed with Pediatric Acute-onset Neuropsychiatric Syndrome or PANS.

According to Stanford Medicine, PANS is “a clinical diagnosis given to children who have a dramatic — sometimes overnight — onset of neuropsychiatric symptoms, including obsessions/compulsions or food restriction.” In addition, children with PANS may have symptoms of depression, irritability, anxiety and academic difficulties.

Terri said around this time, a neighbor shared a story with her about a man who also struggled with gastrointestinal issues and ultimately got diagnosed with Lyme disease.

A lightbulb went off for Terri.

During their visit to Guatemala before Malena’s symptoms worsened, there were reports of children getting Bartonella, a co-infection of Lyme disease, from sand fleas – which were all around the lake where they were staying.

When doctors in Orlando tested Malena, “they came back with Lyme,” Terri said.

They started treatments, hopeful to have finally found a diagnosis.

“Things would get better, and then they would get worse,” Terri said.

Malena at a dance recital. (Copyright 2024 by WJXT News4JAX – All rights reserved.)

Malena said at first she was hopeful the doctors would be able to help her.

“I was like under this belief that doctors are like gods and they are in control of your health,” Malena said. “I was always like, ‘OK, these people are going to help me.’”

But Malena said her trust in medical professionals slowly vanished over time.

“They kind of were like, ‘No, you’re not in pain,’ or like… ‘You just need ibuprofen and continue going to school,’ when I couldn’t necessarily do something like that, unfortunately,” Malena said.

But Terri would not give up on her quest for answers and treatments that would help Malena.

“We started seeing a local doctor that was a little bit more functional integrative medicine… and she was a big help, but she didn’t believe in the Lyme component necessarily,” Terri said.

Why didn’t that doctor agree with the Lyme diagnosis? It turns out, Lyme disease is a controversial topic in the medical field.

Terri and Malena with a lime in their mouths, and each of them is holding a sign that says “I am a Lyme Warrior because…” (Copyright 2024 by WJXT News4JAX – All rights reserved.)

According to Dr. Marcelo Campos writing for Harvard Health Publishing, treatment for Lyme can be so controversial that the dispute is often coined as “Lyme wars.”

Campos said while some Lyme patients do very well after receiving the proper antibiotics, others continue to have evidence of infection despite receiving adequate treatment. However, Campos said, there is no laboratory proof that the bacteria is still present — leading many health professionals to be skeptical about the diagnosis.

“Conventional medicine has a hard time treating something we cannot see or isolate,” Campos wrote. “However, we cannot ignore that people’s lives changed after the diagnosis of Lyme disease. Their suffering is real. And the frustration is widespread.”

According to Terri, while that doctor did not support the Lyme diagnosis, she did support the PANS diagnosis and recommended an intravenous immunoglobulin (also known as IVIG) treatment for Malena.

And after years of trial and error, Terri said — Malena’s health slowly began to improve.

The first investigation

Terri said on top of all the PANS and Lyme treatments Malena had to get, her daughter was also fighting a battle with depression and often saw a mental health counselor.

Malena said that despite all the health challenges, she lived a happy childhood and always had a good relationship with her mom.

“I never felt any concern for how she might react, whether I did something bad, whether I was coming home with a bad report card, whatever it was,” Malena said. “I knew that we could talk it out, and we would still be on the same page, and I would still have her love and support.”

In 2019, Malena was admitted to Wolfson Children’s Hospital for a depressive episode. She was released to go to New York to see her autoimmune neurologist, but when Terri and Malena got back from New York, doctors at Wolfson said they were concerned about the number of different medicines that Malena was taking.

“That’s when it all started,” Terri said.

Terri said the hospital staff asked about Malena’s condition, her treatments — everything.

“I told her the history,” Terri said. “And I even gave her my whole bag of notes because she asked to see things and I said ‘Please, have them.’ I was more than forthcoming with everything.”

Malena in a wheelchair, smiling next to a horse. (Courtesy of Terri Weidle)

Terri said later that afternoon, another hospitalist told her Malena was on too many medicines and that they didn’t think “any of this was going on,” referring to Malena’s conditions.

Malena was released from the hospital, but days later, Terri was surprised by a visit from the Florida Department of Children and Families. They were investigating a potential case of medical child abuse, also known as Munchausen syndrome by proxy.

They spoke with the caseworker and gave him Malena’s doctors’ names and some medical records so he could call and verify what they were saying was true.

“He found [the medical abuse claims] were non-substantiated,” Terri said. “Going back now, I guess we were flagged.”

After that experience, Terri admitted, she tried to avoid returning to Wolfson at all costs even as she continued her efforts to look for answers for Malena.

Malena gets removed by DCF

With Malena’s progress constantly going back and forth, Terri kept looking for treatments that could help her daughter, even outside the country.

Malena received several treatments in Mexico in November 2020. She was 15 years old at the time.

“She was feeling a lot better,” Terri said.

Malena’s quinceañera. (Copyright 2024 by WJXT News4JAX – All rights reserved.)

Then, in December of that year, Malena started complaining of pain and Terri noticed she had a fever.

Still wanting to avoid Wolfson Children’s Hospital downtown, Terri took Malena to the hospital’s location near the Town Center on Dec. 21. They ended up transferring her downtown anyway, and Terri said nothing was done.

“They don’t even do an IV. They barely do any work on her,” Terri said.

Malena and Terri went back home the next day to celebrate Malena’s 16th birthday.

Then 2021 came — and brought an unexpected series of events that will forever remain in the Weidles’ memories.

According to Terri, in January 2021, Malena began having more mental health issues and suicidal thoughts, and at the beginning of February, Malena’s therapist recommended she be admitted to Wolfson’s Inpatient Behavioral Health Unit.

Terri said once again, an investigator — who said she was familiar with her case — questioned her about Malena’s medical history.

The investigator also talked to Malena.

Days later, Terri said, she was told something that caught her off guard.

“I get a call from the supervisor at DCF saying they want me to voluntarily outplace my child,” Terri said. “Well, No. 1, I don’t quite know what she means. But I know I don’t like the sound of what she’s saying. So, I said ‘No.’”

Days later, a DCF supervisor showed up at her door at 11 p.m. with a crisis therapist, two other DCF investigators and two police officers, Terri said.

“She says she’s here to take Malena. She has a court order to take her, and we have a dependency hearing in the morning. So, of course, I’m hysterical,” Terri recalled.

Terri said Malena started having a mental breakdown and passed out. They had to call 911, and firefighters arrived.

“I have video of the Fire and Rescue dragging her down the last several stairs because she was passed out and they were trying to prove she was faking it,” Terri said.

Malena was back at Wolfson, but this time, Terri could not be by her side.

Terri attended the dependency hearing the next day, hoping it was just a misunderstanding. She said she couldn’t understand why they wouldn’t believe Malena’s diagnosis even when she had all the documentation that backed it up.

Terri did not get her daughter back that morning — or any of the following mornings for five and a half months. That’s nearly twice as long as Maya Kowalski was kept from her family.

“I kind of broke down in the hospital and was inconsolable for many days to the point where I was basically just a puddle there, and I wasn’t eating, really wasn’t drinking,” Malena said. “I think some of the nurses got concerned and they started bringing little protein shakes for me to drink instead of maybe eating, which I still didn’t take.”

Watch Malena talk about the emotional pain she experienced in the video below:

During those five months, Terri said, the only time she saw her daughter was during scheduled 10-minute Zoom calls that had to be monitored at all times.

“To see your daughter for 10 minutes on a Zoom call. I mean, we hadn’t been away (from each other) for more than probably two days in our whole life,” Terri said.

Understanding Munchausen syndrome by proxy

Munchausen syndrome by proxy (MSP), now known as factitious disorder imposed on another (FDIA), is a mental illness in which a person, typically a caregiver, acts as if the person they are caring for has a physical or mental illness when the person is not really sick, according to Cleveland Clinic. 

While it is a “relatively rare disorder” there have been some high-profile cases involving MSP.

The most recent one is the case of Gypsy Rose Blanchard, a Missouri woman who persuaded an online boyfriend to kill her mother after the mother forced her for years to pretend that she was suffering from leukemia, muscular dystrophy and other serious illnesses.

Blanchard was released from prison in late December 2023 and is now considered a public advocate for victims of MSP.

News4JAX reached out to Dr. Marc Feldman, an international expert in MSP based in Alabama, to talk more about this disorder.

Feldman politely declined to be interviewed, but he shared some of the warning signs of MSP.

Some of these warning signs include but are not limited to:

  • Persistent or recurrent illnesses for which a cause cannot be found

  • Discrepancies between history and clinical findings

  • Illness abates when the child is separated from the parent

  • The presumptive diagnosis is based solely on caregiver report

  • Caregiver has provided false information to professionals and other individuals

However, in his research, Feldman does recognize there are cases of misdiagnosis.

A 1999 literature review on “Misdiagnosis of Munchausen Syndrome by Proxy,” conducted by Feldman and Dr. Deirdre C. Rand, states that increased efforts to identify cases of medical child abuse have also led authorities to remove children from innocent parents. Therefore, these experts point out that it is very important to look at previous misdiagnosis cases and “what went wrong” to prevent a child from being wrongfully removed from their household.

DCF accusations against Terri

So, what exactly led authorities to believe Terri had MSP and ultimately to remove Malena from her care?

Here are some of the specific accusations made against Terri, according to Child Protection Team reports, which were reviewed by News4JAX:

  1. One report states that Malena’s behavioral problems (unusual rage episodes) were an exaggeration, stating that Terri and Terri’s mother (Malena’s grandmother) were the only ones who had witnessed these episodes.

  2. Malena’s constipation issues were also believed to be exaggerated, per a report. The report states that an X-ray conducted at Wolfson hospital showed no evidence of constipation.

  3. In the CPT report, Malena’s Lyme disease diagnosis is listed under conditions labeled “do not appear to be true,” saying that the diagnosis had not been confirmed by local providers.

The list of conditions the investigators did not believe to be true is long. In fact, the only conditions they believed were real were migraines, chronic pain, depression, anxiety and auditory hallucinations.

Apart from the medical child abuse accusations against Terri, the report also mentions “concerns for mental injury,” stating Malena had been isolated from in-person contact with her friends because Terri had been homeschooling her for five years.

The report also states Malena expressed anger to her providers about “wanting to be a normal child without any medical diagnoses.”

Malena receiving treatment at home (Courtesy of Terri Weidle)

Investigators attributed Malena’s depression and anxiety to her extensive medical care.

“I definitely sat down with myself and questioned ‘Is this really real? Am I making it up? Is this just a bad dream?’ But I would sit down and think, ‘Oh, well, maybe I’m really just trying to get out of school like they say,’ but then I would try and want to do something on an off day, on the weekend, and I wouldn’t be able to do it,” Malena said.

Another concern pointed out in the report was “educational neglect,” stating that Malena might be behind her peers cognitively because of a lack of schooling.

One of the reports suggested Malena didn’t know how to read. Malena told News4JAX she has been a book lover her whole life.

“I used to go through multiple books in a day. I have vivid memories of bringing out picture books when I was a kid,” Malena said.

Terri said that after she read the report with the long list of accusations, she made sure to gather all the documentation she had to prove that each one of those claims was false.

But she said none of that seemed to matter.

“In dependency court, you’re guilty until you prove yourself innocent, but you don’t get an opportunity to prove yourself innocent,” Terri said.

News4JAX reached out to Wolfson Children’s Hospital regarding this case, specifically asking about the process of reporting a parent for Munchausen by proxy and how the hospital handles these investigations.

They responded with the following statement:

“Wolfson Children’s Hospital is committed to the safety and well-being of the children and families we serve, which is why we always comply with the state’s mandated reporting requirements designed for their protection.”

Wolfson Children’s Hospital

In December 2023, News4JAX also contacted DCF, the government agency in charge of removing a child in these cases. We sent them a list of questions that could give us more insight into the process behind investigating and ultimately removing a child for medical child abuse. The agency quickly responded, saying they would work on the request and asking for a deadline. We told them Dec. 18. They never responded again.

Malena in foster care

After spending three weeks at Wolfson Children’s Hospital, Malena was moved to the foster care system, while Terri worked day and night to gather enough information to prove her innocence.

Terri said she tried to have Malena moved to the home of her brother and his wife to avoid having her transferred to the foster care system. But her request was denied because they were “too medically aligned” with Terri’s thinking, Terri said.

“So, you take this child that has had suicidal ideations, and you rip her out of everything that she knows,” Terri said. “She couldn’t contact any friends. They had asked for a list of friends, but they wouldn’t let her talk to anybody.”

Malena lived in two different foster homes — an experience she recalls vividly.

Watch Malena talking about her foster care experience in the video below:

Malena said during her time away from home, she heard all kinds of negative comments about her mom.

“Saying that my mom was basically a manipulative, narcissistic liar. And that my mom was just mentally ill, and that my mom had probably had a lot of unresolved childhood trauma,” Malena said. “They’d compare her to Ursula.”

After five and a half months, a judge authorized Malena to return home.

Over the next six months, Terri and Malena had to be supervised once a week by a caseworker and had to have someone with them at all medical appointments.

But they were happy to finally be back together as a family.

Malena at her homecoming party after being away from home for months. (Copyright 2024 by WJXT News4JAX – All rights reserved.)

Malena comes home

A homecoming party with her family, friends and her favorite food awaited Malena as she returned to the life she had always known.

“I felt an immense sense of relief,” Malena said. “And it was kind of like everything that had been weighing me down and everything that had just caused me so much agony was finally, for a minute, just taken off my plate.”

Terri said after those six months of supervised visits, it all just “went away.”

“We had no court date. We had nothing. It was just over. No apology,” Terri said.

Fast forward to today, Terri has a full-time job and lives with now 19-year-old Malena and their dog, Lexi, in a beautiful home in Jacksonville.

Malena, Terri and their dog Lexi. (Copyright 2024 by WJXT News4JAX – All rights reserved.)

When she’s not working or spending time with her family, Terri can be found researching, looking for ways to spark change, so that no other parent has to go through the same ordeal she and Malena went through.

“It ruined my life,” Terri said with tears in her eyes.

With the Kowalskis’ case verdict, Terri is more hopeful than ever that she, and hundreds of other parents, will get the chance to prove themselves in front of these government and health care institutions.

Watch Terri call for legislation change in the video below:

“My hope is we can bring change in how these cases are handled,” Terri said.

Pushing for change

The Kowalskis’ case was a first. Before that, no one had ever proven a case of medical kidnapping, according to Greg Anderson, a St. Augustine attorney who represented the Kowalskis against Johns Hopkins All Children’s Hospital.

“It’s been motivational and inspiring, and it’s felt a little close to home, which has been hard, but I am grateful for the awareness,” Malena said.

Screenshot of Zoom interview with trial attorney Greg Anderson. (Zoom)

Anderson, a trial attorney from St. Augustine with more than 40 years of experience, said while he knew upfront a case like this would be a huge challenge, he just couldn’t ignore it when he heard what was happening to Maya Kowalski and her family.

“I got really angry,” Anderson said. “I guess maybe it comes from the fact my dad was an FBI agent in St. Augustine and Jacksonville, and I have a strong sense of justice and I got very upset with what I was hearing.”

Anderson worked on the Kowalskis’ case for almost seven years. Seven years that were anything but easy.

According to Anderson, the main reason most of these cases are so hard to prove and prosecute in court is that these institutions, especially doctors, are “pretty much immune” for a lot of their actions by state law and required reporting.

Changing that immunity is key, according to Anderson.

“You shouldn’t have anything that dissuades people from making a report. If you see something, say something. What I am concerned about, and what really needs to happen, is this wholesale immunity granted, no matter how far it goes, and the idea that just because you made an allegation that you can do whatever you want to a citizen and their children, it’s got to change,” Anderson said.

Meanwhile, Malena still struggles with her health, and she has to go through weekly treatments to stay on track.

In fact, she is back on all the treatments that she was on before getting removed from her home, and her health has remained stable, according to Malena.

Malena and Terri. December 2023. (Courtesy of Terri Weidle)

But this young woman is more than her medical challenges and the experience that she went through.

Now, Malena is a typical 19-year-old with a bright future.

She has a part-time job, and she’s working to get her GED since her medical issues put her behind in school. She also enjoys spending time with her friends and family.

While she’s not sure what her future career will look like, Malena is sure of one thing: she wants to make a positive impact and advocate for other people who have endured similar experiences.

Watch Malena talk about her hopes for the future in the video below:

Copyright 2024 by WJXT News4JAX – All rights reserved.

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